IBC lounge: roll call, support and just a good place to hang out
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Hi TT,
Thank you so much. Yes I did post it in the other forum too. I asked Lori as she always answers our questions and has lot of knowledge. I agree that this disease has increased my anxiety and I keep looking for answers from every one. I have asked my doctors, family members and all advise me to keep my anxiety under control. The doctor has ordered a bone scan for me and hopefully I will get my answers. I am thankful to all the members of this group for always giving the right advise. I am sorry for asking to many questions and I am working to keep my self occupied with reading books.
Thank you once again.
Regards
Flora
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Dear Lori
Thank you so much as always. I will follow up with my doctor and I am trying to get counseling for my anxiety. I keep asking everyone and keep complaining about my pains. Thank you so much for the detailed answer and hopefully my doctor will give me some medicine for pain.
It’s so hard for me to walk . I did ice my games when I was on Taxol. I only had some neuropathy in my feet. After few weeks when I finished chemo this pain and numbness started. This whole thing started much before I started endocrine treatment.
I will try to follow up with my doctor and stay positive. Thank you so much once again
Love
Flora
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I didn't notice any problem with neuropathy in my feet until two months after I finished the first round of Taxol. My oncologist said that's not unusual with a taxane.
I've noticed that it's getting worse on Kadcyla and I really don't want to increase my gabapentin dosage again, at least not yet, so I'll be back to icing my feet during infusions again (what fun!). I don't get numbness, I have Grierson-Gopalan syndrome - my feet literally feel like they are on fire with intense burning. I have to take my entire gabapentin dosage at night before bed so I can sleep because the burning pain is so bad, instead of staggering it throughout the day like most people. When it still breaks through, like it has been lately, I have a cooling gel that I rub on my feet. Sometimes I just stick them in ice cold water lol.
I have friends who need walkers or canes because their neuropathy is that bad (numbness causing balance issues). It's something you need to be very aware of depending on your continued treatment.
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I should add, as long as you don't need to do any more drugs that cause further nerve damage, the problem usually resolves on its own as the nerves heal. Not always, but usually. It's more of a long-term problem for us metastatic people who have to keep taking drugs that cause nerve damage. But since you are considering doing Kadcyla instead of Herceptin and Perjeta, you should be aware that Kadcyla can cause neuropathy, so if you already have problems with it you should give serious consideration to icing during infusions to prevent further damage.
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Dera Lori,
Sorry you have to go through all this. My neuropathy started almost two months after finishing chemotherapy as well. I am going to see my family doctor so that she can prescribe me gabapentine or anything . I have pain in my knuckles as well as a trigger finger which looks like carpel tunnel. I have decided to stick with Herceptin and Perjeta. I asked two oncologist and both think since I did not take Herceptin before so they don’t think I can take Kadcyla.
You are always in my mind Lori and I hope you feel better. I pray that you get to Ned . Thank you so much for always helping us out.
Regards
Flora
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Lori, how are you doing? I don't see any messages and I worry.
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Thanks for worrying about me MoreShoes. I've been feeling okay all things considered and have been trying to get caught up on things around the house, but three weeks ago my MO noticed that one of my supraclavicular nodes was hard again, and now it's noticeably swollen. When I asked my husband to feel it, hoping I was imagining it, he said he didn't have to feel, he could see how swollen it is. So chances are pretty high that Kadcyla stopped working already, a whopping whole 15 weeks before my MO spotted the change in that node. Was really hoping to get at least the 7.5 months PFS that the trial showed.
Funny thing is, I was discussing with another HER2+ MBC woman that we both noticed the same thing - if a chemo is making us sick and miserable it's working. If we don't have any SEs, it's not working. I had a great response to Kadcyla in the beginning but it was making me miserable. Last month I started having only mild SEs, and sure enough it seems to have stopped working. That's the 4th time I had a similar experience so now it will always be in my head that unless I am miserable, treatment isn't working.
I see my MO again next week and will likely have to schedule a PET/CT scan to confirm. Not really sure what will be next because there is no definitive 3rd line and beyond SOC for HER2+. Herceptin plus chemo of choice, Herceptin plus capecitabine, Herceptin plus capecitabine plus tucatinib (HER2Climb, but I don't think that triplet is FDA-approved yet), Herceptin plus lapatinib, maybe nerlynx since it works on different HER receptors even though the SEs are debilitating...? Feels like I'm just rolling the dice and hoping to get lucky. And part of me says that since I'm feeling okay, maybe I'll just ride it out for a while haha!
Hope you and everyone else are doing well.
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Dear Lori,
I am so sorry that you are going through this. I am sure the scans will be okay and the treatment will work. You are always in my thoughts and prayers.
Regards
Flora
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Dear Lori, even from these few posts in which we "met" you I know how smart you are, and what good judgement you have and I always hope that for once you'll be wrong - I believe that is this time. It is really good we have lymphnodes... I discussed this matter with the surgeon and he said he did not want to remove them for Sandra, so that if disease returns, lymphnodes are first to catch it and hold for some time. Sure, there's also the blood path but at least... anyways, my point is that maybe you and your MO could consider some local treatment to that lymphnode if (IF!!!) there's something there. Saulius
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Ah, I forgot to say that we have whole-body ultrasound today, and the whole-body CT tomorrow. Scanxiety through the roof:/ Ahh... Saulius
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Hi Saulius,
I can understand the anxiety for scans but God willing everything will be okay. And as you mentioned Lori you are one of the most kind women I have met who has helped so many people. I am sure something will come out to check the swollen lymph nodes.
Regards
Flira
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Saulius if it were only one or two lymph nodes there would be an option to treat locally, but I started Kadcyla after I developed mets in several dozen lymph nodes throughout my body, multiple clusters from my neck down through my abdomen. We were originally hoping to treat locally but a scan showed there were too many over too large of an area to treat locally. It's a different situation than when someone has locoregional mets in the axillary and/or clavicular lymph nodes, different than a single mediastinal node. And we played the game of hoping it was just an immune system response when we first discovered a swollen node last year. I wasn't even on Kadcyla long enough to scan to see if it cleared up the nodes completely. All we really know is that I had an immediate response to my first infusion of Kadcyla and now the same symptoms are back.
I appreciate everyone's positivity, but it is what it is and I'm a realist. The tumor in my brachial nerves has been acting up too, and I was hoping that it was just my bra irritating it, but now that a node is visibly swollen and has been getting worse for weeks...it's a real long shot to hope once again that it's just an immune system response when we already know that the cancer is in dozens of nodes. I'm not going to let myself give in to that kind of false hope.
I hope your wife's scans go well Saulius.
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Dear Lori, I am sorry, I did not know you had this lymphnode-involvment - I probably missed it somehow. For sure that changes some things and systemic treatments must be in place, not local ones. Believe me, I am never a hopeless optimist, and I never fall for false hopes but if you had response from T-DM1, who knows what is the real situation. This can be evaluated only from scans, and I hope they come sooner. Wish you all the best in this fight. We are this community that when one feels bad, everyone does. There were many times when I cried over loses in these forums. We do care... If I could only help somehow. I do think of everyone of you guys daily but this is all I can do being on the other side of the ocean:/ In the mean time my wife's ultrasound was "all-clear", and today she had whole body CT. It is just a coincidence these two (US and CT) fell just one day apart but we will be happy to have a complete picture...
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MoreShoes, how are you doing? You are a TN megastar, so fill us in.
Lori, you never cease to amaze me with your honest explanations of your treatment and your extensive knowledge of the drugs that you are taking at any particular time, or those that your might need in the future. Your mets are so extensive, and your treatments have had such mixed success, that I always hope on hope that your latest post bears better news. I don’t hear good news now, but I’m hoping you and your oncologist can come up with a drug that works for a reasonable time.
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Thanks TT. When you reach the point where there's no defined path and you have to choose the next treatment to try, I think it's important to try to understand those choices, the pros and cons of each, especially with this latest trend of triplets. I could never be the kind of person who leaves it completely up to my doctor. I know I'm lucky that being HER2+ gives me more drug choices, but it's overwhelming at times and most of the HER2+ targeted drugs have some nasty SEs. I forgot to include DS8201 (now called Enhertu) in my list of choices,it was just FDA approved last month. Toxicity level is horrendous (50% Grade 3 and higher Adverse Events plus a few deaths attributed to the drug), but it's a choice, and I know someone who was in the trial for two years who tolerated it well.
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Lori, I'm really sorry. It sucks. *Big Hugs*
I'm hoping there's a new drug cocktail to help.
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TT, thank you for asking. In January I found out that the tumor in my lungs got bigger. I still feel fine and I'm still standing. I've decided that I won't do any chemo until it's necessary. My MO says that she admires me and wishes that more patients were having the same attitude.
I still go to work, where nobody knows about the tumor. I cried for a week, but then pulled myself together. Now I try to enjoy my life and every morning I thank the universe for still being around.
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Glad to hear that you are feeling well MoreShoes, that's the most important thing. I don't blame you one bit for holding off on chemo, if my stupid cancer didn't grow so darn fast I would too so I could just enjoy living for a while. Are you on any treatment right now, or holding off on everything until you need chemo? That's s probably a stupid question because there really aren't any other options for TN yet besides chemo, is there? I know there's been a big focus on trying to find something for TN, but I haven't seen much success in that arena yet. Big hugs back at you, I hope you continue to feel well for a long time.
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Lori, I have no words of wisdom or advice, but I have to tell you I'm standing with you. I read your posts eagerly and look forward to the next, hoping you'll bring us good news of your treatment. Sending you encouragement and friendship over the miles.
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Thanks SB!
We agreed that we're going to continue to monitor for now, and if it gets worse I'm to call him immediately to get the scan scheduled and discuss treatment options. This makes me happy that I can continue to enjoy my current QoL at least a little longer. If we jump to change treatment every time at the very first sign of any progression, I likely would've burned through all of treatment options already and been a lot more miserable along the way.
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Yes, you are so logical Lori, the life/treatment balance that you are after makes perfect sense. It must be possible to be spooked promptly into yet more treatment options, but since scans and bloods rarely give unequivocal guidance, you are stretchingthe good times to the max.
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Dear Lori,
Sending big hugs from Canada. I always come to check your updates and wishing you good health and happiness always.
Regards
Flira
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It is tough to achieve the right balance TT. I'm friends with a HER2+ woman who has had similar resistance problems, and she said that in hindsight she wished her MO didn't change treatment options so quickly at the very first sign of progression because now she's out of options already and it's frightening. She's at 5 years and has been in trials for over 2 years.. The only thing she can do when a trial treatment fails is hope that there's another trial she qualifies for.
My MO and I are on the same page that as long as my QOL is good, we don't want to mess with it until we have to. I need to have some periods of feeling somewhat normal to balance out the rest of the shit show. I've been able to spend some time with family and friends doing things I enjoy the past few weeks and it's been fantastic! My MO probably took into consideration that in January I told him that I was getting worn down from everything I had been through the past 2 years, physically and mentally. It's funny that I had posted here that maybe I'll just let it ride for a while, and then he said the same thing at our consult. I know that a lot of people don't agree with that treatment philosophy, but given the resistance problems I've had, how my cancer keeps growing, all of the locations I have active tumors, I'm really in good shape otherwise compared to many MBC women I know who have less active cancer than I do. The median for a Stage IV de novo IBC Dx is 22 months and I'm at 29 months with plenty of options left to try, so I think we're handling this the right way.
I did just have my first serious drop in WBC since my Dx, so I'm going to have to keep an eye on that. My WBC always ran high, normal high end is 10 and I always hovered between 10-11. Yesterday it dropped to 6.8 and the low end is 4.2. Maybe I'm just settling into the normal range, but if this infusion drops it further I need to watch for neutropenic fever (I take my temp several times a day). This is the first time that chemo has ever impacted my labs.
Saulius thank you for your good thoughts and I'm glad to hear that your wife's scan was clear. That is terrific news!
Flora, thank you for the hugs and good wishes!
I miss Amarantha and ADDK, I think about them every time I visit this thread.
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Lori, your approach sounds so wise. If it were me, I would probably be wanting to blast through every treatment AT THE SAME TIME and be completely out of options in a week's time. Your balanced perspective gives you the chance to walk a line between constant illness from treatment and progressing illness from cancer. I'm cheering for your WBCs to hang in there.
I miss them too.
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Dear all, Tuesday's full body CT for my wife (got results on Friday) was also "all clear", so both ultrasound and CT coincide. Now we have to figure out what to do to stay in this "position"... Sincerest hugs to all, Saulius
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Congratulations Saulius!...I would guess that continuing the protocol you've been on would be a good place to start...if it's working don't change a thing!
I'm realizing now, that my suffering started when my Mo told me to reduce some of the supplements I had been successfully using to deal with the SE of the therapy. I'm still fatigued by the low-hemoglobin, but all the other debilitating problems created by the reduction of those essential minerals are finally getting slowly under control!
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Dear Frisky, such a big thank you, also thank you for the best wishes on another thread. Yes, for sure we'll go on with what we have already done, with small evidence-based "experiments" here and there, closely monitoring everything, maybe going for extra immuno-therapy (DC/CIK) if circumstances allow and our immuno-oncologist recommends it. I just hope and pray you also improve - the feeling, surrounded by bodily signs, of taking things under control is very important and is exactly what you need now. You have done so well for so long (just look at photos you posted - full of life and beautiful!), and I am sure that with advances in science (I know how critical you are towards it and you have a right to be critical as they crewed up too many times) we all will get to see a better day. With all my heart, Saulius
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Hello everyone
As my name suggests, I’m here on behalf of my mom. Since we suspected IBC a month ago, I’ve been fervently ingesting anything IBC-related online and came across this particular thread in mid-February. I’ve spent quite a few late nights reading every single post back from 2016 when PurpleMinion so graciously started this roll call. I’ve been reporting back to mom with the various developments as she’s not very computer savvy at 66yo.I hope it’s okay that I’m here - you have all been so courageous and the reports back to mom have encouraged her so greatly in what she believes is a death sentence.
A little background on Her now that we’ve had a progress report:
Stage 3 IBC (whether it is 3b or 3c is not known to us as yet). There is lymph involvement however CT and bone scan show no metastasis to lungs or bone, for which we are grateful (and mom is surprised). Clinical notes do not indicate which lymph nodes are involved.
ER/PR+, HER -Today she goes for a PICC line followed by AC #2 of 4 which is being done biweekly. After this she will be on Taxol (as far as we are currently being told) for a further 4 sessions at which point she will have surgery, radiation, etc.
After session one (which we are choosing to call the Red Soldier instead of the Red Devil), she has been given a glowing progress report - some fading of erythema and peau d’orange, and less thickening. I am optimistic but as my mother is a scientist, she requires a little more to go on before she will start to feel optimistic too. I can’t blame her but try instead to find ways to help her cope with the side effects both physical and emotional. Coconut oil pulling seems to be helping with the mouth soreness. She is also in conversation with doctors to use medicinal marijuana (we are in Canada btw) We had looked into a cool cap but our hospital doesn’t offer it. She doesn’t seem to care about hair loss though. Her nails became a bit more brittle even after one session and we are using nail strengtheners in the meantime but not sure iF itll help. dad has been a trooper - won’t let her wash a single dish. They are both staying actively involved in the lives of their grandchildren who give them so much joy.
Well that’s it for this stream of consciousness. I continue to stay up to date with all of your posts, relay them to mom, and wish you all the best possible outcomes.
I would be grateful for suggestions for what I can do to help her (should I step back a little?), and what she can do for herself. I am out of my depth a bit here
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Hugs for you and your Mom Hereforher. Since I was Stage IV de novo I'll step back from the discussion of treatment for early stage, there are many knowledgeable people here to provide advice.
I would strongly encourage your Mom to ice at least her feet and maybe her hands during Taxol to prevent or limit neuropathy. Neuropathy from taxanes is often severe enough to require a reduction in dose or even stop the drug altogether, not to mention it can affect quality of life with pain, numbness, balance issues, etc. I wish someone had told me to ice the first time I did Taxol.
Rinsing with baking soda and warm water has helped my mouth sores. Once I started doing that proactively right after each infusion instead of waiting for sores to develop, it seems to help prevent them. If her sores are really bad and nothing is helping, there is something called Magic Mouthwash that her oncologist can prescribe. I believe it contains lidocaine.
Don't step back, just be there for her. Each of us reacts differently to chemo, and differently to each chemo drug, so her side effects will likely change as she changes drugs. Always feel free to ask any questions!
I wish her very successful treatment. There are many great success stories here.
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Great that you are helping your mom, Hereforher. And amazing that you have read the whole thread to date!
It's not a death sentence, necessarily, since many people, including me, have been here for years and on an earlier thread as well. I was 3B and the same gene expression as your mom (ER/PR+, HER -). We are the luckiest of all, since treatment generally works well. She is having neoadjuvant treatment and will be able to gauge the effectiveness of the chemo before surgery. Surgery will then get the tumors and surrounding tissue and likely she will have a axillary lymph node clearance before radiation.
It's all tedious, but it's all doable. Between her medical team, you and your dad, she's in good hands. Keep us posted and ask any question you wish.
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